To my unborn baby (with a potentially fatal diagnosis)

First off, I should begin by explaining that your full name is Jedidiah, we just call you “Jed” for short. It’s a great name, well for one, because that was the wisest man who ever lived, so it gives you something to live up to. But really, I just always thought it perfect for a little boy with freckles on his nose running barefoot through the back yard swinging a stick pretending to be a pirate. It sounds like lincoln log towers, fishing rods, toy trucks, grass stained jeans, dirty feet, tousled hair and t-ball practice. You should know, I love your name.

Here’s something else you should know. You are the youngest of my four children. You have three big sisters. The first one is pretty bossy, but she’s your best bet if you need help tying your shoe or need some sympathy. She will mother you half to death, and see it as her personal duty to teach you everything you need to know about life. The second one will steal your camouflage shirt, slap you right back if you decide to fight, and be the first to say I’m sorry. She will be your partner in crime, your biggest fan, and you friend for life. The third one will be more like your little sister, she will watch you and learn from you. She’s the one that will help you learn how to be a man…to be kind, to have patience, and to protect those who are weaker. I know that’s a lot of girls for one little boy to handle, but don’t worry too much about it. You will be so loved.

The day I found out you were a boy, was a day that made me very happy. You were the sunshine breaking through the clouds of a long hard year. I’ve always wanted a little boy. Before I ever had any kids at all, before I knew what it was like to be a mom, I imagined you there. You’ve been missing. In a house full of girls, pink, meltdowns followed by giggle fests followed by more meltdowns, and tea parties, your dad has sorely been needing a little man to keep him company. And then there you were, on your way. You are so wanted.

Not all babies like you are wanted. See, not too long after I started shopping for tiny boy clothes, I found out that something was going wrong with your body. You have a random, unpreventable little problem called a bladder obstruction. This is causing fluid to back up into your kidneys and hurt them. You also can’t make the fluid around you like you should. With no fluid, your little lungs can’t grow. This is something that only happens on this scale to 1 baby in 8,000- 23,000 babies, and for reasons I’ll never understand, it happened to you. We have talked to a lot of doctors about this…obstetricians, specialists, neonatologists, nephrologists. Because your lungs haven’t had what they needed, and because your kidneys are so damaged, they don’t expect you to make it past birth. They say that if you do, and the “if” is a pretty big one, you will be very, very sick for a long time and need a lot of help. To hear this about you, the little boy we so wanted, was crushing in every sense of the word. I have no idea what it is like to have cancer, but to hear this news about you must be something of what a cancer patient must feel to hear a doctor tell them the cancer they are fiercely battling has been joined by a newer, more deadly kind. To have the thing, (and by “thing” I mean a critical, life threatening diagnosis for my child) come in a whole new form, only stronger, with definite, indisputable plans to thoroughly destroy this time, is soul numbing.

They said I could do a thing called terminate. That means I could pay a doctor to stop your heart before you’re born. Because somehow, signing your life away would be a compassionate thing to do. The first time a doctor offered this as an option for you, I was looking at you on a big screen. You were kicking and waving at me and your little heart was beating strongly. You weighed one pound, ten ounces, you were already bigger than your big sister was when she was born. For one small second I didn’t see you at all, I saw her. All one pound of her, laying in a fancy plastic bed, wearing the cutest little diaper you’ve ever seen. I felt her tiny hand on the tip of my finger and her fuzzy mini sized head. I saw long, long days in the hospital, tubes and wires and tests and endless reports. I relived every anxious minute, remembered every desperate prayer, and felt my heart brake into a thousand pieces all over again. And I said, “No thanks doc, we’ll be keeping him. No matter what.”

Three times I had to tell them. I know what I picked. I know the statistics. I know what a sick baby looks like with nauseating clarity. I know the fight for you we will have, if we even get the chance to fight it. Medically speaking, it’s practically game over already. Socially speaking, I’m crazy for putting myself through a horrible experience for what appears to be a hopeless outcome. Here’s what neither of those two worlds understand, babies like you, babies like your sister, all the babies out there who are “broken”, deserve the dignity of meeting life on your own terms as individual human souls. Human value is not earned, acquired or conditional. Value just is. It is because the thing that is valued is unique. It is irreplaceable. It is not something easily created or reproduced, I can not go have ten more exact copies of you made in a lab. You are you. The only you that will ever exist. You are unarguably valuable. Your next heart beat, your next kick, are not things that I, or anyone else, have the right to take away from you. Your health issues do not make you less of a person. Your location of existence does not make you a less of a person. Your inability to breath on your own does not make you less of person, if that were the case, your sister at 14 months old would still not qualify as a human being. You are so valuable, and not just because I say so, because it is so.

So here we are, every day getting closer to meeting you. To have the discussion of death when life is just beginning seems an inconceivable sort of evil prank. It’s so easy to get lost in the questions. Why would God ask this of us? Why this for the boy we always wanted? How could we be asked to walk an even harder road than the one we already know? Does God even care? The questions are endless, merciless, mocking. I cannot tell you what I do not know, only what I know. I know that God never wanted this world to have to meet sickness, heartbreak, death. I know that He feels my pain, He had a Son too. I know that in His eyes, your life and mine are of equal value. I know that when the hard of life is just too hard, grace is always bigger. I know that when there is nothing and no one, I will find Him still with me. I know that He has never left me to drown in my problems before. I can rest on the solid fact that He does not change…what He has been before, He still is, and always will be.

Let me be clear, just so you don’t get the wrong impression, your parents are not some sort of spiritual giants who find trusting God always an easy thing. Not even close. Here is the thing though, God’s faithfulness to us does not depend on our faithfulness to Him. The question of your future has broken us and torn at us like nothing ever has before. We have questioned, we have gotten angry, we have prayed, we have not prayed, we have felt every emotion thinkable, we have failed more questions on this test than we have passed. But He is so, so much bigger than our box of failures.

The bottom line is this, you came to us by God’s design. If we lived in a perfect world, your health issues would not exist. But we don’t, and they do. I know of no other way to make sense of it all than to allow your life to be a real and visible marker pointing our family, and anyone else who may be watching, to the God who chose on purpose to let His Son die for our sin. To the God who can love us through our darkest moments. To the God who can carry the most crushing of problems. To the God who can take the mess of sickness, death, and heartache that sin created and make something beautiful out of it. We are not the only people in the world who have had this happen, but not all of them know this God who can give them hope. That is why we need to share your story. I want you to know your life has a purpose, and it is in every way worth keeping.

No matter what the future may hold, I’m looking forward to meeting you soon. If I had to do it again, I would still choose you.

With all my love,

Mom

Psalms 37:39 But the salvation of the righteous is of the LORD: he is their strength in the time of trouble.

About Abby

I'm a mom and blogger. I love all things creative! Follow along at www.chapterthirtyseven.com

I feel unspeakable sadness that you are struggling through this, yet also unspeakable joy that you have a faith in God to carry you through it. Your honesty and openness before the world and your trust in Him during something so daunting humbles me. Prayers being sent to the One who always listens.

Abby, you know our sweet Drew was never “perfect” in the eyes of many in the world. But, with God’s grace, he was loved and cared for each and every moment we had with him! We could not have asked for a more precious child in our lives. I love you, and understand better than most that sometimes God speaks differently to some parents. I am grateful I was one of them. I know you feel the same about Christina. I also believe you and Rich will cherish each and every moment you have with Baby Jed! Please know I will be praying for all of you…Laureen

I have been waiting for another post. (Update on the Mini, house projects or anything.) I was so happy until I saw the title and then my heart broke for yours. God continues to be a loving Father and has amazing plans for your family and Jed. I’m a former special education teacher if the medically fragile and so I know your hands are full with little Christina and your older girls. But, I am familiar with not losing hope and how much God is the Healer and how little doctors and statistics can tell us. I have a missing chromosome and doctors told my mom to terminate because ‘it’ would live and if I did I would be retarded. I am so greatful to have a Godly mom like you who knew who was in control and that with God all things are possible. I will continue to pray for you, Jed and the mini. I will pray for God’s peace that passes understanding, for His will not ours to be done and above all His grace, mercy and love to surround your family as this plays out. Absolutely Nothing is outside the power of prayer except what is outside the will of God. I am positively sure that your family is entirely in the will of God and will take whatever this evil sinful world throws your way. God bless you and keep you in the palm of his hand.

Paula your comment was such an encouragement! What a great mom you had to protect your life despite that advise…and now you get to help other people with your life. I just love stories like yours! Thank you so much for sharing.

I’ve only just found this site & post so baby Jed will have been born.
I still want to applaud your decision to fight for him. 58 years ago my twin and I were born with spina bifida, had tests been available I know we would never have been born.
Sadly my sister lost her life at 4 years old. I however am here and living to the fullest I can. I’m not whole (who truly is?) but I have as much to give to this world as I take out.
Thank you for not seeking perfection, from another less than perfect person.

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Welcome to chapter37! I'm Abby, the face behind the blog, and I'm so glad you are here! I call myself mom to four beautiful stories being written...two typical girls full of sparkles and giggles, one former preemie winning her battles one at a time, and a little man living life with gusto despite kidney failure and liver cancer. I write about the kids, the house, and all the mess in between. I hold the opinion that anything in life can be handled with God, a paint brush and a healthy sense of humor!